Worrying about Hospital Referral over eye condition / diagnosis

[Deleted User]

I finally plucked up the courage to book myself in to see the Opticians last week, before doing all of this though I notified my GP explaining I was having problems with my vision, tingling crawling sensations allover the body and stomach problems (gas and water constantly churning in the stomach) When I complained about the latter two 8 years ago I was told it was just anxiety no further tests needed. I feel no pain but it's constant.

2 bloodtests later regarding the vision the second of which failed I'm still none the wiser of what the heck is going on. I was prescribed two sets of long term tablets for Folic Acid and Calc something for Vitamin D, yet another bloodtest needs to be scheduled in 12 to 16 weeks to monitor this. The second bloodtest that failed was meant to be for high blood pressure, full blood count again, liver functioning and something else. A third is scheduled in a couple of weeks.

Now to the Opticians the vision in my right eye is all blurred (lacks detail) until I press the object against my face. In my left eye I see pulsing, text and some brighter images swaying away from it's actual position. I was told what's happened in my right eye is beginning to affect my left. Based on our conversation it sounds like Keratocus. They wouldn't specify what the issue was though and said I needed a Hospital Referral as she couldn't identify the cause. Me being me I'm fearing blindness. Suffering with social anxiety and self loathing is no help to me in this regard. I was prescribed glasses but had to refuse, she said they may have better treatment options at the hospital, but insisted I should still pick a pair of glasses up for the forseeable.

This is just another crushing blow to my appearance. Was already struggling to cope with the stress of hairloss, short height etc amongst other issues as well as my inability to socialise. Things just keep on getting worse. I have had to endure all these awkward phonecalls, sticking to appointments and the like even though I hadn't even left the house again in almost 2 years... It's freaking me out. All this alongside making a Universal Credit claim and having to deal with phonecalls with a Work Coach even though a fit note was provided.

So now I have to wait. Hopefully the Opticians found the correct address to forward the referral. I gave the right DR's name but the medical centre is called Integrated rather than Medical, so hopefully the referral doesn't go elsewhere.

Spoonie_Turtle

Why did you have to refuse glasses?

Unrelated to your topic but it's always a good idea to ask for a copy of your blood test results. That way you can see what they actually tested for and what the numerical results were - if nothing else for future reference so you can compare to future results, but as you've had ongoing problems it may help any research you do yourself into potential causes. (I'm not saying self-diagnose, but in case you find possible causes to discuss that perhaps your doctor might have overlooked or may not even be familiar with.)

[Deleted User]

Spoonie_Turtle said:

Why did you have to refuse glasses?

Unrelated to your topic but it's always a good idea to ask for a copy of your blood test results. That way you can see what they actually tested for and what the numerical results were - if nothing else for future reference so you can compare to future results, but as you've had ongoing problems it may help any research you do yourself into potential causes. (I'm not saying self-diagnose, but in case you find possible causes to discuss that perhaps your doctor might have overlooked or may not even be familiar with.)

The reason I refused to buy some glasses on the day is because I hate the way I look. There is no way I could add the stress of wearing glasses to existing problems. The way I look is part of the reason I rarely leave the house. If I did reluctantly agree to glasses I would have needed a second, third, possibly a fourth opinion. At the moment I can see reasonably well with my left eye, I'm sure I could survive another 2-6 weeks without glasses, hopefully I know for certain what the issue is by then.

The Optician mid session actually recommended contact lenses but the ones I would need wouldn't be available in store and I would instead have to wait for the referral with the hospital for an actual diagnoses with next step options.

With the self diagnosing I always take the information given and do research about it on the net. With the information provided by the Optician I managed to find Keratocus which sounds similar to what she mentioned on the day. Similarly with the Doctors. In the first set of blood tests he was checking for things such as diabetes, thyroid, high cholesterol, all of which came back clear. With the prescribed tablets from the first set of blood tests I had already done my research on them before a family member collected the prescription, any snippets of information I pounce upon. The second set of blood tests failed so disregarding a possible false reading on the liver couldn't be done.

Spoonie_Turtle

Deleted_User said:

Spoonie_Turtle said:

Why did you have to refuse glasses?

Unrelated to your topic but it's always a good idea to ask for a copy of your blood test results. That way you can see what they actually tested for and what the numerical results were - if nothing else for future reference so you can compare to future results, but as you've had ongoing problems it may help any research you do yourself into potential causes. (I'm not saying self-diagnose, but in case you find possible causes to discuss that perhaps your doctor might have overlooked or may not even be familiar with.)

The reason I refused to buy some glasses on the day is because I hate the way I look. There is no way I could add the stress of wearing glasses to existing problems. The way I look is part of the reason I rarely leave the house. If I did reluctantly agree to glasses I would have needed a second, third, possibly a fourth opinion. At the moment I can see reasonably well with my left eye, I'm sure I could survive another 2-6 weeks without glasses, hopefully I know for certain what the issue is by then.

The Optician mid session actually recommended contact lenses but the ones I would need wouldn't be available in store and I would instead have to wait for the referral with the hospital for an actual diagnoses with next step options.

With the self diagnosing I always take the information given and do research about it on the net. With the information provided by the Optician I managed to find Keratocus which sounds similar to what she mentioned on the day. Similarly with the Doctors. In the first set of blood tests he was checking for things such as diabetes, thyroid, high cholesterol, all of which came back clear. With the prescribed tablets from the first set of blood tests I had already done my research on them before a family member collected the prescription, any snippets of information I pounce upon. The second set of blood tests failed so disregarding a possible false reading on the liver couldn't be done.

Right. In that case I'm not sure I have anything constructive to add, sorry. I hope the specialist can definitively pin down what it is and give you advice for how to manage.

(I didn't mean I thought you were self-diagnosing by the way, I just meant in reference to research in case anybody thought I was advocating self-diagnosis above seeing a doctor. Self-advocacy and being an informed patient is quite different and often necessary.)

suejb2

Keratoconus. Do you mean this condition ? Mine cannot be remedied by wearing glasses. I need specific contact lenses. Seen at the hospital annually and a very knowledgeable ophthalmologist.

[Deleted User]

suejb2 said:

Keratoconus. Do you mean this condition ? Mine cannot be remedied by wearing glasses. I need specific contact lenses. Seen at the hospital annually and a very knowledgeable ophthalmologist.

Yeah, only realised I misspelled after posting the second message. I won't know for certain what condition I have until I get my appointment at the hospital. I'm hoping I'm not referred for a MRI scan as I just want to be told once and for all what's causing my vision to deteriorate in both eyes.

All of this is guess work for now based on what the Optometrist said on the day. What does concern me though is Astigmatism and Keratoconus can usually be detected and diagnosed on the high street according to what I've seen written on the internet. Keratoconus just sounds the most likely based on the detail shared and my symptoms.

The waiting process for this is stressing me out. I was told the issue I'm having is not genetic (In my case) and isn't because of something I did. She seemed to share a lot of detail without an actual diagnoses. Which leads me to think I could have two issues going on rather than just the 1.

I think the Optometrist believes contact lenses would be for the best too but she said the ones I would need are not available in store.